I don't even know where to begin this post, that in a nut shell describes the chaos of this week.
Monday night Noah woke at his regular 2:00 AM time but this round he also woke his brother. Shane took Jonah out of the nursery and we immediately had a difficult time calming him. When we took him in to our bedroom we noticed how pale he was and how fast he was breathing which immediately scared me. We hooked him up to our Pulsox machine (a God send) and found he was saturating ok but his heart rate was on the high side. I knew immediately something was wrong. We waited the restless night out and by morning I knew Jonah was going to go first thing to the doctor.
Shane stayed home (both of us were so exhausted) and took Jonah while I looked after Noah at home. He came home to say the doctor said his lungs were clear but to air on the side of caution she decided to order both blood work and a chest x-ray. After Shane brought Jonah home I continued to have a horrible feeling in my stomach that something was wrong. He was so pale, and trying so hard to breath and most concerning his normally mild Strabismus(irregular eye movement) was out of control. He could not control his eyes at all. I have never seen this in Jonah but he had no ability to focus on anything and his eyes were moving everywhere because of this I ended up calling his neurosurgeon afraid that his VP shunt was malfunctioning. His Madera specialist wanted to see him immediately.
So, in a rush, I packed Jonah up plus a pair of pj's for the night just in case and headed out. Shane and I continued to be on the phone for the next two hours making sure insurance was in place and that the pediatrician's office was communicating the chest x-ray results to the neurosurgeon's office, etc.
At 3:00 PM, I received a phone call from Dr. Ho/Dr. Pardo telling me Jonah's blood work was fine but that his chest x-ray was showing bi-lateral pneumonia and that I needed to let our specialist know that the x-ray also showed CHF. For what felt like the first time I found myself not knowing what the doctor's office was referring to in relation to my son's condition. When I questioned exactly what CHF was the office secretary did not have specifics just the order from the doctor to please have me communicate to his specialist what had been found. I made sure that the radiologist reports were faxed and rushed to the hospital.
Jonah's neurosurgeon saw him 15 minutes before his office closed. After tapping his shunt and checking his valve he determined everything was functioning. I immediately related the information given to me from Bakersfield including the CHF info. Our neurosurgeon looked puzzled and said, "Congestive Heart Failure?" I looked at him with panic. He found the official Bakersfield radiology report and sure enough, the Bakersfield radiologist had diagnosed bi-lateral pneumonia and congestive heart failure. I found myself sitting in the room and suddenly thinking the absolute worst, I was going to lose my baby. After all the fights, surgeries and heartache we were going to lose him.
Jonah's specialist just sat there and said, "this can't be right, Jonah has no history and I'm sure his lungs and heart have always looked this way due to his prematurity."
Our next nightmare was because of our insurance and being out of area we were not allowed to be directly admitted, we had to go through the ER process. Jonah's neurosurgeon was wonderful. He made a call to one of the Pediatric floor doctor's and told him he was sending Jonah down and to get him through as quick as possible. All in all we sat in the ER waiting room for maybe 20 minutes before they got us back to the exam area. We waited there for two additional hours while they ran blood work and an additional chest x-ray. Almost immediately the pediatric doctor sat down with me and reassured me that the radiologist report was most likely an adult radiologist with not much experience reading x-rays belonging to premature children and he felt Jonah was just fine. Sure enough, within hours the pneumonia and CHF diagnosis' had been ruled out. They began several rounds of influenza tests and blood work to check for anything and everything (yes, including swine flu). Wednesday blood work was looking good but to reassure everyone the pediatric doctor ordered an echocardiogram of Jonah's heart. The techinician took what seemed like forever and then left by asking me if Jonah had a cardiologist in the past, ummm....no! That is the one specialist we DON'T have and don't want! This of course sent me back in panic mode and I spent another eight hours waiting for the results (much to the dislike of the nursing staff as every two hours I spent pestering them for results). Finally that afternoon the doctor called me to say that the echo had returned showing some water around Jonah's heart but this was attributed to whatever virus he was suffering and it was not considered an issue unless in the next few weeks Jonah's condition worsened. He reassured me things were fine and they wanted to make sure Jonah was eating well (which he was not doing at this time) and get him off IV fluids before sending him home. Last night Jonah finally started eating and keeping food down. This morning the doctor wanted to run one more round of blood work and also another panel of influenza tests just to assure everyone that swine flu was absolutely not a possibility. Finally by early afternoon Jonah started showing signs of his old self and by 3:00 PM we were FINALLY discharged. This was our shortest hospitalization yet and thank the good Lord the CHF was immediately found to not be an issue.
My first emotional thought (obviously not very rational) after all this hell was, who fired the Bakersfield radiologist and sent in the kindergarten teacher to read the radiology report? How in the WORLD did the radiology clinic in Bakersfield come up with SUCH a severe diagnosis, do we live in such an uneducated area that even our medical professionals are lacking in proper training? This was not even a minor discrepancy, this was a FULL BLOWN mistake. A monstrous, astronomical error. I was furious, frustrated and absolutely overwhelmed that the results could be so off base. I felt like I could have walked in to that room and read my son's x-ray with more knowledge then the supposed radiologist himself.
Let's just say that this morning found me on the phone with Truxtun Radiology demanding to speak with their supervisor. I explained the extreme diagnosis given compared to the actual findings in Madera and asked to speak with the Medical Director regarding the clinic's overall pediatric experience. After all, Bakersfield has a population of 500,000 people....we are not the only family with premature children. I can guarantee that. I want to know what is being required of these radiologists in way of yearly training, credentialing, etc. Aren't medical doctors required to credential and take various medical seminars year to year to stay fresh and current in their fields? I may not have medical experience but I have worked in health care and I know for a fact that docs are required to stay on top of new findings, technology and diagnosis' that affect their field of expertise. So what happens to radiologists and why is this major office that provides service to a large part of Bakersfield not seeking to require better education of their radiologists? There are absolutely no excuses. It comes down to the fact that my pediatrician was making a decision based off their report and if that had been the direction pursued who knows what kind of care Jonah would have received. One can only hope that additional testing would have found things different thus preventing any treatment of CHF and further causing damage to my son.
I am more then furious, I want answers. I am to the point of pursuing something legal. This is nothing short of poor experience which is NOT acceptable when it comes to the care of my boys or my family.
Needless to say the radiologist supervisor only acted as an ear piece. She took my information and said she would have the Chief Radiologist review the report and get with me. She also said the information would be sent to administration. That was this morning and to my shock there was no immediate phone calls back this afternoon so tomorrow I have my work cut out for me.
Why do I feel like I am constantly battling the system? Since when did I sign up to shadow every health care personnel and make sure they are actually doing their job correctly? I feel like if I don't show up to the radiologist, pediatrician, hospital, specialist, therapist, whatever, someone, somewhere is not taking the time to review the history of my sons and to carefully understand their current situation due to their extreme prematurity. How do families without the ability to advocate do this? Never did I think that I would be a child advocate to my own children, in fact sometimes I almost find myself laughing, not in a comical way but almost incredulously at the fact that at one point before children I was looking in to signing up to be a state appointed child advocate. How truly ironic that somehow after the fact I find myself being thrown in to the role. While stewing over the state of things this morning the Shakespeare quote came to mind "Be not afraid of greatness; some are born great, some achieve greatness, and others have greatness thrust upon them." Before I am misunderstood, I have to say I do not mean this in the sense that I consider myself in that circle of greatness...I more thought of the quote in the sense of that sometimes we find the greatest of challenges are "thrust" upon us and we can either strive for greatness in overcoming them or we can bend to the back breaking pain and forget to move forward. I have done both my friends, I have done both. I have made great strides at times and at times I find myself breaking under pressure and wallowing in the hardness of my situation. Obviously greatness is the goal and I was grateful for that reminder today when I found myself stalling in the frustration of the week.
Setting that aside, I guess with the state of health care being what it is things will probably only continue to get more difficult so best that I "gird my loins" while I can and prepare for the long road ahead.
For those of you fortunate enough to have never visited the hospital, count your blessings and thank God for your health. You never know what a precious gift good health is until you find yourself thrown in to a situation without it.
For now, we are home. Noah started this morning with fever and crankiness. We almost found ourselves rushing him down to Madera but after feeling things out decided to keep him home on constant Tyenol and play it safe.
We are second guessing our decision to take the boys out of isolation now that we have battled two hospitalizations in a month's time. With swine flu out and about we are trying to decide if having the boys out is a good idea. For this weekend they are staying home and possibly for the next couple of weeks to come they will not be going to church or nursery. We aren't ready for another round of hospitals and we are not ready for them to be around a ton of children yet. Hopefully this swine flue hysteria will be under control soon but it is terrifying knowing a case was found not even an hour from here in Tulare County.
Big hugs to all of you who sent thoughts, messages and prayers our direction. We flew Grandpa Langston down last night and as always, he is a blessing to our family. I am at ease knowing he is here.
Hopefully our next posting will be filled with day to day details like enjoying spring and watching the boys grow. I really enjoy posting this much more than anything else.
Until next time, God bless.